Category: Infusion

Sometimes affirmation comes from the most unlikely places, somewhere totally unexpected. I guess that’s how you know that the message is clear.

Yesterday affirmation came from Justin Bieber. Whut?! How’d that happen?

I bought “Songs for Japan” months ago. It’s a compilation album sold on iTunes. Proceeds of which go to the tsunami relief effort in Japan. One of the songs included in the compilation was Justin’s song called “Pray”.

I had my music player on shuffle as I was on my way to the hospital for my infusion. Justin’s song found its way in the rotation.

I’m nowhere near a Justin Bieber fan. Somehow I like this particular song. It has a good message and a good beat to match. It’s uplifting.

I guess when God wants to talk to you he’ll do it in such a way that it’s clear. Making me listen to a Bieber song can’t be any clearer. He wants me to continue doing this.

On my third day of praying, I was starting to feel happy again. I don’t expect my fears to magically disappear or my life to suddenly fall into place. However I’m starting to feel that things will be ok. Here’s a portion of the lyrics that I found really nice.

bq. ‘Cause I know there’s sunshine behind that rain I know there’s good times behind that pain Can you tell me how I can make a change?
I close my eyes and I can see a brighter day I close my eyes and pray I close my eyes and I can see a better day

bq. I close my eyes and pray for the brokenhearted I pray for the life not started I pray for all the ones not breathing I pray for all the souls in need I pray, can you give ’em one today?

Yesterday my infusion went well. It took one needle prick to get the line in. I was able to sleep during the infusion, checking out of the hospital wasn’t much of a hassle. Oh and I followed one advice from an article I read on Facebook the other day. It said, life’s never too busy to have a cup of coffee with a friend. In this case several friends.

If you want to listen to the song I mentioned, I’m attaching the video below. There’s also a nice quote at the end of the video that says.

bq. God speaks in the silence of the heart. Listening is the beginning of prayer.

This will be a quick post. My 33rd infusion went well… No hitches, nothing really out of the ordinary. That’s pretty much it. Why is this short? Well… It’s been a month since my 33rd infusion. I had to skip a session because my aides got sick and I didn’t have anyone to go with me to the hospital. I also didn’t want to risk their health by forcing them to go.

The downside is, my 34th infusion will be the last one with Dr. Lani. It’s sad, I spent a year and a half with her. Almost every other Tuesday, we’d spend most of it together during the infusion. In that period I got to know her well.

I’ll save my thoughts on this matter for another post. I’m going for my 34th infusion in a few hours. Wish me luck.

I got my 32nd infusion last May 15. The actual infusion day/process pretty much went the same as it usually does. But there are events and circumstances prior that were a bit different.

The night before, we checked into the hospital. We arranged for a rental BiPap machine to serve as a backup to the one I was using. They didn’t have the same model as the one I’m using. Instead they had the older BiPap S/T available. We went ahead and rented that. Even if I couldn’t sleep anymore with that type of machine, at least I could be kept alive with it. Losing sleep is much better than not being able to breathe.

The thing is… when they brought the machine to the room, the guy didn’t bring a calibration machine. He assumed that the machine would give the pressure that the dial was turned to. Granted that’s the case usually. However since this is a rental machine, we bought bacteria filters to use with it. I wasn’t sure who had used this prior and if they cleaned it well. I didn’t want to catch a disease from the machine. The downside about the bacteria filter is it obstructs the airflow quite a bit. So the settings that the machine is set to isn’t accurate anymore. The only way you’d get the correct read out now is through a manometer, which he didn’t have. Oh well.. So I couldn’t use the machine. We still decided to keep it though just in case my good machine conks out.

My mom actually fainted due to that event. She freaked out because I couldn’t use the machine and she was really worried for me. If the good machine I was using decides to quit in the middle of the night, it would mean real trouble. She was ok though by the end of the night. We reassured her that it was usable and we just had to take out the filter.

Apart from that incident, everything else was pretty much quiet. We were able to start on time and finish early. I was supposed to have physical therapy after but I begged off since I had to come home early and wait for the technician to look at my machine again.

My 31st infusion started a day early that what it was supposed to be. May 1 is Labor Day and as such a non-working holiday. It fell on a Tuesday which coincides with my infusion day.

Since it’s a holiday the regular hospital staff has the day off. Only essential staff and doctors will be on duty. So we decided to move it up a day. Instead of May 1 I would be having my infusion on April 30.

Like most infusions it went pretty well. Except we started a little bit later. The Rehab doctor stopped by prior to us starting and talked to me. We’re starting a new program and hopefully that would really help improve my condition.

The whole infusion went well. Things of note though were, this is the first infusion that my mom wasn’t there, my doctor felt ill while we were having our infusion, we started a little bit later than usual. Apart from those things were pretty much as they usually are on any given infusion day.

I really thank God that so far so good.

Oh, my doctor said that the next ICAP approvals were already a done deal. Hopefully we get the next batch of enzymes before this current supply runs out.

The title says it all. I wrote about the “photo shoot”:http://www.fightpompe.com/article/132/so-thats-why-models-are-paid-a-lot that I was on a few months back and now it’s finally published. The gruelling 7 hour photo shoot (well ok, ok, it wasn’t gruelling and 2 hours of that were spent having lunch) has finally paid off. Genzyme recently published its “2006 Annual Report”:http://www.genzyme.com/corp/investors/fin_fact.asp.

I knew it was destined to come out some time April. I checked Genzyme’s website recently and the annual report was there already. I eagerly downloaded the “PDF version”:http://www.genzyme.com/2006_ann_rpt/2006_annual_report.pdf and looked for the photo. I saw it moments after, in all of its splendid black and white glory. Ok, enough drama and exaggeration. To be fair it was a great photo.

!http://www.fightpompe.com/images/37.png (Photo that came out in Genzyme's 2006 Annual Report)!

The final photo was that of my dad and I. It was taken in Tiendesitas, a local shopping area. It’s an open type of shopping area. My dad was pushing me down a walkway that was lined with stores selling native art and crafts. If I’m not mistaken I was looking at a drum made by an indigenous tribe.

I feel really honored to have been chosen by Genzyme to represent Pompe patients and Myozyme users in their Annual Report. The past year has truly been a blessing since I am able to receive Myozyme and representing patients in the annual report means a lot to me.

Does this mean the start of my modelling career?….. Nah… I don’t think so…

I had my 30th infusion last April 17, 2007. How time flies by so quickly. I can’t believe it’s been 30 infusions already. It would have been sooner hadn’t it been for the slight interruption in our schedules. But even with the delay, time seems to have still flown by so fast.

It’s a milestone indeed. I’m happy to have gone this far without much setbacks. I’m happy and keeping my fingers crossed that despite 30 infusions I have yet to suffer an adverse reaction. I hope it stays that way. It’s just a bit worrisome since some patients have reported allergic reactions even after 30 infusions. I’m still banking on the fact that I’m not the type of person who has many allergies. In fact, I can’t remember a specific substance that I’m allergic to.

The infusion day started out ok. We were early for a change. In fact, we were so ahead of schedule that I didn’t even get to do somethings that I normally do as part of my pre-infusion ritual. The resident tasked to do insert the I.V. line was there at around 9 a.m.

She got the line in one go. That’s definitely a plus. On the flipside though, she forgot to flush it with saline solution. The blood clotted a bit. So my regular doctor had to flush it out later on. But no biggie.

Funny thing was, the resident was looking at me after she finished inserting the line and asked, “so were you able to finish highschool?”. I answered her in a joking manner, “doc, are you trying to insult my intelligence?, I have a degree in Industrial Design”. We laughed at the same time. She was then quick to say that she thought because I was sick I wasn’t able to finish school. She said I looked sick coz I was lying in bed. That’s quite true. I am sick. But I guess I’ve always thought that being sick isn’t an excuse to stop doing things. Besides I was much better when I was younger so it wasn’t really that hard to finish school. If I had to do it now, then that’s another question. I’d still finish it but it will be harder.

We started infusion at around 10 a.m., that’s ahead of our regular schedule. We usually get started at 11 a.m. I was hoping that we’d finish on time. However even prior to starting infusion I was really feeling like I was going to have a cold. I told my doctor this and she would have postponed the infusion if it were not for the fact that the Myozyme was mixed already. We couldn’t waste it. I told her also that I wouldn’t allow a delay. I would deny that I was sick if it came to that.

The infusion finished early. By 1:30 p.m we were done. I thought I was going to finally be able to go home early. Nope. Life had other plans. My cold got worse and I developed a cough. I couldn’t expel it properly so I got stuck in the hospital room for the rest of the afternoon. Till such a time that I felt well enough to go home.

I got worse the next day. Developed a slight fever caused by the cold. It wasn’t that bad though, just took some cold medicine, drank a lot of liquids and slept the whole day. By evening I was starting to feel better. The fever was almost gone.

48 days after my last infusion, I’m finally back on track. Yeah baby! April 3 marked my return to regular infusions. At least for the next 3 months it will be back to regular programming.

I’m really happy to be back on Myozyme. The progress I was having got side tracked so I’m really excited to get back into exercising more. The last few weeks when I wasn’t on Myozyme, it was a little bit more difficult to exercise. I get tired quicker.

The hospital stay is similar to the previous infusions with the exception of two things. One is that I got to use the newly renovated rooms of the hospital. Nothing big really, new paint, some new furniture and other small things.

The second is that for the first time my regular aide wasn’t there. We’re starting the transition. My regular aide Jordan is going on to better things. He’s hoping to land a new job in Qatar. So for the first time it was just my new aides. Well not new actually. Mike was my old aide but he left for awhile. Jhonny is the newest addition but he’s also Mike’s brother. They aren’t as qualified as Jordan because Jordan took up Physical therapy but so far I’m ok with them. They make up for it in other ways.

Thank you God for making the infusions possible again. Thanks to the guys at Genzyme, thanks to my doctors and all my family and friends who prayed that I get back on track as soon as possible. You guys rock!

I just got word that I will be going back to my infusions on Tuesday. Hooray! My “last infusion”:http://www.fightpompe.com/textpattern/index.php?event=article&step=edit&ID=138 was February 13. That was almost 7 weeks ago. Quite a long time between infusions. Rather than dwell upon that I’m just happy to hear that we’re finally getting back to it.

I’m hoping that my body adjusts well to getting back to infusions. After all these weeks without Myozyme I hope my body will not have any adverse reactions to getting back on it. I’m confident it won’t.

I’m really excited to get back on track to exercising. I never stopped but I couldn’t push myself as much. I’d always feel tired and out of wind.

I was doing 25 mins on my handbike before stopping the infusions. Now I could barely get to 20 mins. By that time my arms are so heavy.

Here’s to getting back to infusions. Thanks to my doctors and the people at Genzyme for getting this done.

It’s been 27 days since my last infusion. So it’s been awhile since I’ve seen the inside of a hospital room. In a way that’s a good thing. I’ve been going to the hospital twice a month for the past year and 2 months that a break is ok as well.

I’m still unsure when I will resume the infusions as I’ve yet to receive word from my doctors about when we can start. While the break from the infusion is unfortunate since I was really getting into the groove of starting to exercise more, there are also positive aspects to it. Ok, maybe not that positive but hey, you always need to look at the bright side of things.

One of those things is that it’s been 27 days since I’ve gotten poked by a needle. That’s good. I think my veins are welcoming the time off.

Seriously, the break has made me think about the benefits of Myozyme and how they’ve affected my life. They say, you never really know the value of something till it’s gone. In this case I hope it’s only temporary.

I’ve actually felt the difference. After a year of Myozyme, I can tell the difference already. It seems that I have less energy now to do things. When I was on Myozyme, I didn’t really feel tired during the course of my ordinary day. Now towards the end of the day I feel sleepy. In fact just this afternoon I’ve had to take a quick nap around 6 p.m. because I felt tired. I really didn’t do much, seeing that I woke up late this morning as well.

In terms of exercising I’m finding it difficult now to do so. I’m finding it difficult to exert myself the same way as I did when I was on Myozyme. I feel my arms are like lead. Although this gets better as I push above the 10 min level on my hand bike. They say this is the second wind, when the body shifts from a glucose/sugar based energy source and shifts to burning fat and protein. I’m no scientist so I really wouldn’t know.

The good thing though is that so far there aren’t really any adverse reactions to not being on Myozyme. I’ve been worried that there will be some since my body got used to having it the past year that taking it out will have some sort of reaction. I’m crossing my fingers it doesn’t

As I enter my 4th week of not having an infusion, I’m praying that everything will still continue to be ok. I’m also praying that we sort this out and that I can resume my infusions again at the soonest possible time.

I’m on a break from regular infusions. Myozyme didn’t come on time and I’ve had to skip an infusion, maybe two or more. Still uncertain at this time.

So far it’s been ok. I’ve been feeling a bit sluggish but I’m not sure if it’s because of skipping the infusion or it’s due to the fact that I’ve been feeling bad. The other day I thought I was going to get sick. I felt a cold coming. I drank a lot of juice and slept early. Seems to have worked but I’m still feeling sluggish. I still have a headache.

It’s been four days since I was supposed to have my infusion. I’ve asked my friend who also takes Myozyme. She said that the longest she’s gone without it was 4 weeks and things seemed to be ok. I’m not expecting any problems other than probably the lack of energy. The only thing I feel sad about is the progress I’ve been making. I’m excited to keep adding to it but it seems like it will take a back seat for the mean time.

What I feel good about though is that I know people are trying their best to get it here as quickly as possible. Sometimes things like this just happen.

Your prayers will be appreciated. God might hear them and decide to speed things up.

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About Fight Pompe

Welcome to my corner of the virtual world. I mainly put up this blog to chronicle my fight against Pompe Disease. A rare genetic disorder. Apart from that I wanted to write about things I've learned going through my experience, stuff I love which includes design and a bunch of other stuff. I hope you enjoy reading my entries. Check out my about page for more details.